I think I have CFS, right?

[Somnolent]

Hello,
sorry for my English, I am not a native speaker. I have been lurking for some time, reading about symptom and checking other related websites. I am 40 yrs. old and I have suffered idiopatic fatigue since I was 18.

All of my symptom have been treated separately and never seen as a "syndrome", such as IBS, unexpected anxiety, fatigue, stress intolerans, post exertion malaise etc...

So I went to wikipedia and checked CFS sympotm and this the list:

1) A new onset (not lifelong) of severe fatigue for six consecutive months or greater duration which is unrelated to exertion, is not substantially relieved by rest, and is not a result of other medical conditions. CHECK

2) The fatigue causes a significant reduction of previous activity levels. CHECK

3) Four or more of the following symptoms that last six months or longer:

• impaired memory or concentration YES
  
• post-exertional malaise, where physical or mental exertions bring on "extreme, prolonged exhaustion and sickness" YES
  
• unrefreshing sleep YES
  
• muscle pain (myalgia) SOMETIMES
  
• pain in multiple joints (arthralgia) YES
  
• headaches of a new kind or greater severity NO
  
• sore throat, frequent or recurring SOMETIMES
  
• tender lymph nodes (cervical or axillary) SOMETIMES
  

4) The CDC states other common symptoms include the following

• brain fog (feeling like one is in a mental fog) YES
  
• difficulty maintaining an upright position, dizziness, balance problems or fainting SOMETIMES
  
• allergies or sensitivities to foods, odors, chemicals, medications, or noise YES TO ALL
  
• irritable bowel syndrome-like symptoms such as bloating, stomach pain, constipation, diarrhoea and nausea YES
  
• chills and night sweats NO
  
• visual disturbances (sensitivity to light, blurring, eye pain) YES
  
• depression or mood problems (irritability, mood swings, anxiety, panic attacks)) YES
  

No doctor has suggested CFS and I have doubts they know about it, but I feel my problem match CFS very well. At least 80%

Some say it is psychosomatic but it's nonsense. Others have tried to treat single problems with different results. At the moment I am not working and looking for an explanation and some other way to deal with the problem then treating each symptom separately.

I am going to learn about methylation protocols but I think I will have to do it myself as I have never found a doctor that is updated on this syndrome.

Do you think I have CFS? Am I wrong?

 

[daisybell]

Hi @Somnolent and welcome to PR!
Is there a specialist you might be able to go to see for confirmation in your country?

Out of interest... Was the onset sudden or gradual? Can you date it to any particular virus/infection?

 

[WillowJ]

hi, welcome to the forum.

 

[CantThink]

Hi and welcome.

I don't know whee you live, but if you think you have M.E. perhaps you could see a specialist. If there are none in your country, could you afford (energy wise and financially) to travel and see one elsewhere? There is one in Europe and others in the US.

 

[Alea Ishikawa]

Hi, Somnolent - I would actually suggest you get other conditions ruled out first, such as low B12, low iron, etc. See if you can safely eliminate common allergens from your diet, like dairy and wheat, to see if it improves your condition. Also, consider doing an environmental allergy test.



Have you had an MRI? Have you had any testing for viruses or bacteria (such as HHV6, EBV, or Lyme)?



If you have multiple chemical sensitivity (MCS), I suggest a methylation protocol. Be very careful to keep up your potassium as it can lower while on a methylation protocol; low potassium can be fatal.



Are you able to travel for a CFS specialist?

 

[poppythecat]

Have you had your thyroid tested? You need TSH, FT4 and FT3. In the UK most doctors will try to refuse to test FT3 - yet this is the vital test and T3 is the active hormone used by every cell in your body. You also need to have iron, folate, ferritin, Vit D and Vit B12 tested. All need to be well in range, not just bottom.

When you have those tests done, make sure to ask for a print-out of the results. FT3 needs to be mid range or higher.

Then order the saliva cortisol test. You may need to do some research to see who does that test in your country. Or you may be able to Fedex your samples to Genova UK.

 

[zzz]

Hi @Somnolent, and welcome to PR!

The Wikipedia article you cited uses the 1994 Fukuda definition of CFS, which has been the official definition most widely used until now. Under this definition, you definitely have CFS.

The Institute of Medicine (IOM) recently released a report containing a new proposed name (Systemic Exertion Intolerance Disease, or S.E.I.D.) and a new definition:

• A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest
• The worsening of patients' symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise
• Unrefreshing sleep
  
  At least one of the two following manifestations is also required:
  
  
• Cognitive impairment
• The inability to remain upright with symptoms that improve when lying down—known as orthostatic intolerance

Under this definition, you definitely have S.E.I.D. - the disease formerly known as CFS. This definition is much more accurate than the old Fukuda definition, and the fact that you fulfill its requirements completely is a strong confirmation that you have CFS (or S.E.I.D., if and when the Institute's recommendations are adopted). S.E.I.D., unlike the Fukuda definition, is not an exclusionary diagnosis - you don't need to get anything ruled out first. The I.O.M. report specifically states that S.E.I.D. is not psychological or psychosomatic.

No doctor has suggested CFS and I have doubts they know about it

Your doubts are well founded. Most doctors are completely ignorant about CFS.

but I feel my problem match CFS very well. At least 80%

They fulfill both definition requirements completely. Few people have all the symptoms, but that's not necessary for a diagnosis of CFS. You fulfill the stated requirements completely, and therefore it's safe to say that you have CFS.

I think that as you look around these forums, you will learn a lot about treatment possibilities and who the good CFS specialists are. Good luck!

 

[Tammy]

Another welcome to PR. It sounds like you are in the right place..........I diagnosed myself after 6 months and then it was confirmed by an immunologist who also specialized in me/cfs. Wishing you the best with this journey that I wish none of us had to be on.

 

[Somnolent]

Wow, so many messages. Thank you very much to all of you.

Hi @Somnolent and welcome to PR!
Is there a specialist you might be able to go to see for confirmation in your country?

Out of interest... Was the onset sudden or gradual? Can you date it to any particular virus/infection?

It was sudden. I started feeling ill when I was 18 after a short period of stress and never recovered. From there all I can remember is my energies was 50% of other people. I needed more rest and could not do physical effort or sports.

In the next years more symptom appeared, persistent influenza symptom and food allergies. When I finally found a natural doctor who changed my diet I recovered a little, found new energy but it didn't last much. 2-3 years later I was worst than ever.

 

[Somnolent]

Hi and welcome.

I don't know whee you live, but if you think you have M.E. perhaps you could see a specialist. If there are none in your country, could you afford (energy wise and financially) to travel and see one elsewhere? There is one in Europe and others in the US.

At this moment I have a lot of problem travelling so I am trying to find if some nutritonal terapy could help me find more energy and heal the intestine problems which at the moment is very bad.

 

[Somnolent]

Have you had your thyroid tested? You need TSH, FT4 and FT3. In the UK most doctors will try to refuse to test FT3 - yet this is the vital test and T3 is the active hormone used by every cell in your body. You also need to have iron, folate, ferritin, Vit D and Vit B12 tested. All need to be well in range, not just bottom.

When you have those tests done, make sure to ask for a print-out of the results. FT3 needs to be mid range or higher.

Then order the saliva cortisol test. You may need to do some research to see who does that test in your country. Or you may be able to Fedex your samples to Genova UK.

Yes I have done a milion tests. Blood, urine, x ray etc... all values are normal. Iron is ok. B12 is ok. The test was also analyze by a ematologist.

I am taking vitamin B supplement to see if they can give me more energy and I am reading the simplified metylation program. Hope it will help.

 

[Somnolent]

Hi @Somnolent, and welcome to PR!

The Wikipedia article you cited uses the 1994 Fukuda definition of CFS, which has been the official definition most widely used until now. Under this definition, you definitely have CFS.

The Institute of Medicine (IOM) recently released a report containing a new proposed name (Systemic Exertion Intolerance Disease, or S.E.I.D.) and a new definition:

• A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue—which is often profound—of new or definite onset, not the result of ongoing excessive exertion and not substantially alleviated by rest
• The worsening of patients' symptoms after any type of exertion—such as physical, cognitive, or emotional stress—known as post-exertional malaise
• Unrefreshing sleep
  
  At least one of the two following manifestations is also required:
  
  
• Cognitive impairment
• The inability to remain upright with symptoms that improve when lying down—known as orthostatic intolerance

Under this definition, you definitely have S.E.I.D. - the disease formerly known as CFS. This definition is much more accurate than the old Fukuda definition, and the fact that you fulfill its requirements completely is a strong confirmation that you have CFS (or S.E.I.D., if and when the Institute's recommendations are adopted). S.E.I.D., unlike the Fukuda definition, is not an exclusionary diagnosis - you don't need to get anything ruled out first. The I.O.M. report specifically states that S.E.I.D. is not psychological or psychosomatic.


Your doubts are well founded. Most doctors are completely ignorant about CFS.


They fulfill both definition requirements completely. Few people have all the symptoms, but that's not necessary for a diagnosis of CFS. You fulfill the stated requirements completely, and therefore it's safe to say that you have CFS.

I think that as you look around these forums, you will learn a lot about treatment possibilities and who the good CFS specialists are. Good luck!

Than you very much. I never heard about SEID. Good to know.
I have doubts this is known in non english spekaing countries.

thank you very much again for the informations

 

[CantThink]

At this moment I have a lot of problem travelling so I am trying to find if some nutritonal terapy could help me find more energy and heal the intestine problems which at the moment is very bad.

I'm not sure what intestinal problems you're having exactly, but you might fund looking up the GAPS diet interesting.